Day 4, recovering in NYC hotel
Pain level: 4-5/10
I finally got sleep. It was broken up into 3 hour chunks due to bathroom trips (which are excruciating), but I no longer feel like a zombie. The hospital gave me tons of laxatives and, well... you get the rest. It felt absolutely amazing to get out of the hospital, however.
The pain is enormous, specifically in my quads and hip flexors. I'm convinced that whoever says that this procedure/recovery were not painful, at least in the initial stages, is flat out lying. I'm doing my best to manage with 2mg Dilaudid and 750 mg Methocarbamol every 8 hours, and 1000 MG of Tylenol 3x/day. I would take the opioids more frequently but they make me super loopy. The muscle relaxers I can only take 3x/day. Leg swelling has gone down a bit, not much. No bleeding around sutures.
I'm going to rest for a while and do my PT this afternoon. An hour seemed like light work before the surgery, now it feels like a Herculean task.
Precise 2.2 CLL (femurs) with Dr. Rozbruch - February 2023
Quote from: uponly on February 10, 2023, 06:10:25 PMDay 4, recovering in NYC hotel
The pain is enormous, specifically in my quads and hip flexors. I'm convinced that whoever says that this procedure/recovery were not painful, at least in the initial stages, is flat out lying.
100% Agreed
Day 5, hotel and travel home
Pain level: 6/10
Misery index: complete 10/10
There's so much to say after today. While not the most painful day, certainly the worst overall.
I actually woke up pain free, ate a decent breakfast and with my friend's help, started to pack and get ready to travel back home. After we left the hotel, everything went wrong.
We got a wheelchair accessible vehicle to take us to the airport. The drive was about 80 minutes through New York city traffic and potholes. I was in significant pain when we arrived at the airport. At the United desk, the attendant didn't want to help us - she kept pointing to the machine while texting (this was the First Class desk). The porter who was helping with our luggage actually yelled at her. At TSA precheck, which I have and my friend did not, they first let us through, then separated us at the last minute, because the TSA gate agent wanted to exercise his God-like TSA powers. They had plenty of staff, but no one bothered to help me. A passenger behind me took it upon himself to both help me and yell at the staff, while other passengers raised their voice as well and commented on how messed up that was. I finally went through, got my carry-on, and wheeled myself all the way to the gate, since I couldn't find my friend.
All I can say is that New Yorkers are massive d*cks in general. They do not give a sh*t if you're handicapped. Both handicapped bathroom stalls were taken by non-handicapped people (more on bathrooms later). While wheeling myself through the airport, not a single person offered to help. Several people on their phones almost walked into me (one did) because they expected the person in the wheelchair to get out of the way. I finally made it to the gate, and my friend did about 20 minutes later as he went through regular screening.
While getting on the plane: I was first through line as I both needed additional assistance, and was flying back in first class (1A and 1B). Here's where things get both interesting as well as educational. Your own wheelchair does not fit on the airplane. It's more than twice as wide as the aisle. So the airline is supposed to have an attendant waiting there to transfer you to one of their tiny wheelchairs and get you on the plane. The attendant was nowhere to be found. I waited for 35 minutes, in absolute humiliation, on the side of the door, as everyone looked down at me, and the flight attendants were desperate to find out where this person was. The pilot himself went to the front desk. The entire flight boarded. I was still waiting. Finally, someone came and with a lackadaisical attitude, put me in the tiny wheelchair and moved me 5-7 feet through the plane to my first class seat.
The airplane staff was absolutely mortified. I was livid. The gate agent came over to tell me it was my own fault for having my own wheelchair, at which point the captain lost it and told her "we have a playbook for this and it should have never happened". She shrugged and looked at me and said I'm sorry and asked if I needed anything. I told her I needed her to leave.
The airplane staff was super nice to me. By the time I landed, they had someone waiting, and my wheelchair was also waiting while they opened the door. They had also issued a refund for my flight. I didn't ask. In the airport where I live (also a big city), people left and right were asking if they could help us, and several airport staff went above and beyond to help us secure a wheelchair accessible taxi, which were mostly unavailable that evening for some reason.
On going to the bathroom on the plane: there's a youtube video in cyborg4life's channel where he apparently got feedback from 3 post CLL surgery patients, and at least one went to the bathroom, but said it was very difficult. I don't think cyborg4life lied. But I think whoever gave him that feedback wasn't being truthful. I would not have attempted to go to the bathroom unless my life depended on it, and I was in Row 1, literally steps away. I didn't have a walker, and if I did I couldn't use it. It's wider than the aisle. You're not walking on your own, even on weight-bearing nails, immediately after the surgery. During the recovery period, you're exhausted from 3-5 steps. There is no feasible way I see someone walking to a bathroom, standing for the line to clear, etc., from the middle of the plane, on a plane that may suddenly start shaking, etc. I brought a male plastic urinal onboard and was prepared to use it under dire circumstances, but had gone to the bathroom before and ended up being OK.
I got to my place fully exhausted and in a lot of pain. All the movement takes an immense toll on your legs. I had a massive fever from the exertion (102.7) and broke into a sweat that drenched the bed. I didn't sleep well - I was in pain pretty much the entire night, and taking a day to rest.
Things worth noting:
- The male urinal plastic thing, hand sanitizer, body/butt wipes and the reaching/grabbing device are some of the most useful things you can have. They will make the difference between endurable pain and sheer misery.
- Bathrooms on a plane. Not possible. In my experience, I don't know how someone in their first week of CLL would be capable of this feat
- Stories of people doing elliptical for 20 minutes, walking, whatever immediately after surgery: these are either fabrications or the people doing these thing have super powers the rest of us do not. Whatever nail you have, your legs are FULLY BROKEN. In speaking to my personal Dr., he explained the pain and swelling phenomenon to me. Your body has no idea of what happened to you - it doesn't know that this was an elective procedure or that you just came out of a car crash, or that you have full bearing or partial bearing nails. It knows it is under major trauma and will rush platelets, red blood cells, etc. to the site to repair. This is why you have the bruising and swelling, as well as the pain. They are indicators for you to rest and leave the traumatized site the hell alone. The legs will feel the same for a while. Heavy, hurting, tired, and the smallest movements will leave you dizzy and in pain.
I wish the people writing these diaries would have been a bit more forthcoming about the degree of pain and effort this involves, and how much it really takes out of you, especially during the first 1-3 weeks (which I hear are the worst). I am certainly of the personal opinion that doctors that make their patients walk immediately post-operatively or during the first few days extensively are absolutely medically irresponsible. Dr. Rozbruch and the hospital staff drew very strict lines around what was expected of me, and how much movement they wanted in the beginning stages. I overdid it yesterday, through sheer circumstance and with travel movement, and paid a massive price.
- how handicapped people are treated. Yesterday put people on crutches, in walkers, in wheelchairs etc. in a completely different perspective for me. I tried to be courteous, but I have to admit I've used the handicapped bathroom before, and being inpatient waiting in line behind a person in a wheelchair. Having now been fully on the other side, I think I'm an a**hole for having done those things. We're hopefully in this situation temporarily, but many are not. We don't do enough to make their lives easier, and that's incredibly sad.
The first 1-2 weeks are the worst for everyone using the precise nail.
After the 2nd week, there is a massive drop off in terms of pain / discomfort. After that it's mainly about being on top of your PT.
No matter how bad of a day you may have, you never have to live that fking day again.
Day 6, Home
Pain level: 4-5/10
Quote from: stretched on February 12, 2023, 09:55:18 PMThe first 1-2 weeks are the worst for everyone using the precise nail.
After the 2nd week, there is a massive drop off in terms of pain / discomfort. After that it's mainly about being on top of your PT.
No matter how bad of a day you may have, you never have to live that fking day again.
Appreciate your support and I hope you're right. That was awful on a completely different level.
*****
I woke up with no fever but in a lot of pain. I had pain in parts of the body where there had been no pain previously (lower left back). Chalking this up to the plane ride. No fever. I took my morning supplements and meds and went back to sleep for a bit.
I spent the day mostly recovering from yesterday. The entire lower half of my body feels like it went through a very aggressive wash cycle. I set up some things in my place that I hadn't for ease of access, etc., and made sure to eat well. My focus was spent on pain management. Today is the first day I took 4 MG of Dilaudid in one dose since the hospital. I got the pain under control about 30 minutes ago.
I noticed the pain is much worse in my non-dominant leg, which is also much weaker than my dominant leg. Something to work on as I rebuild. First solid bowel movement all week - huge win as far as I'm concerned. I'm urinating a lot - I bought several more male urinal bottles so I can either rotate/clean or throw them away and replace. Swelling has not gone down much, and my Dr. thinks it will be like this for another 1-2 weeks. The uncontrolled tremors seem to be gone.
I also spent time reviewing the surgery notes, which were posted in my HSS portal today. Dr. Rozbruch had said that there were no surprises in the OR once the operation began. My bones were very healthy, and everything was completely routine. The notes reflect the same thing, and I hope that's prognosis for a speedy recovery.
The real work begins tomorrow, at 8 AM, with the first distraction. I am supposed to distract each leg 4x/day. 8 AM, 12 PM, 4 PM, 8 AM. If I miss a session after midnight I am not supposed to make up for it, I am supposed to inform Dr. Rozbruch immediately. I blocked off 1 hour in the day for PT as well. One of the nurses in the hospital said the entire key to success with this procedure is consistency and patience. Once you start distraction, everything has to be done on the same exact schedule at the same exact time every day, very strict and disciplined routine. I'm going to start sleeping early in the hopes of getting 10-12 hours a day of sleep, and we'll see how everything goes.
I did notice something else. I measured my weight, unassisted (I am partial weight bearing) and I went UP in weight by about 11 lbs last week.
Given the amount of time I've been sedentary, this wouldn't be a surprise. However, I haven't really eaten much, and my body has been purging constantly for over 3 days. Does anyone here know how much the 12.5 mm Precice nails and accompanying screws/rods weigh? It may not be the entire 11 lbs for both, but it's certainly a non-zero number.
I tried searching online using multiple search parameters and came up empty. Planning to email and ask Dr. Rozbruch tomorrow.
Days 7-8, Home (Distraction started Day 7, .8 mm/day)
Pain level: 2-7/10
Yesterday was an amazing day comparatively. I slept a healthy 11 hours the day before, with only bathroom interruptions and night sweats (more on this in a bit). But I woke up with almost no pain in my legs. I distracted for the first time in the morning, on schedule, then 3 more times subsequently throughout the day. I spent the day working, relaxing, and opening tons of Amazon boxes with deliveries like the giant toilet seat with handles, shower seat with handles (returning the first one I bought) etc. I've started to really appreciate support handles everywhere I can find them.
I hung out on my balcony watching the water and the sun, watched TV, ate normal food. Appetite was fine. I had an appointment with my primary care doc, who answered a ton of questions that are really designed for post-operative care and better answered by your PC doctor. He recommended Turmeric as an additional option for inflammation, said that the weight gain was probably from the 3 liters or so of IV fluid during OR and being on an IV for some time, and that the swelling in my legs will last for another 10 days or so (f*ck). He was VERY surprised that I was allowed to travel that soon. I think I'm the first patient in his practice that has done this, but he's a world class doc himself and has taken care of me for 18 years - his opinion was a week's hospital stay at least. Alas, here we are. He said that the frequent urination was me still expelling liquid as the swelling gradually decreases and I can expect that to maintain for a bit as well (great).
He recommended hyperbaric chamber treatment as a healing accelerator, as well as short stints in an infrared sauna. I have access to the latter, looking at places near me for the former.
I did one hour of PT, and did it late. This was a severe mistake. My legs shot up in pain immediately afterwards, and had difficulty falling asleep.
During the night, I had drenching night sweats to a degree I've never experienced. The entire bed was fully soaked. I woke up miserable and in pain, to the point where I canceled my day and went to sleep. I emailed Dr. Rozbruch and he said it's most likely reaction from surgery or anesthesia and should pass.
Other than meeting my girlfriend for Valentine's Day dinner, nothing else planned. One more distraction left in the evening. I have split up PT in half and will not do PT after 3 PM anymore - lesson learned.
So, it seems as if I'm transitioning from a week of pain to a week of constant misery. I "lost" 6 of the 10 lbs gained, probably expelling fluid. I learned that sleep in large amounts is your #1 BFF during this process. Nothing has made a difference like a good night's sleep. I still haven't found out how much the Precice nails weigh.
Help wanted from you good folks that have gone through this:
- What has helped you with reducing swelling and inflammation, aside from prescribed meds?
- Can you massage areas that are in pain (not incision sites, but quads, etc?)
- If yes, do you use a massage gun, and if so, which one is the best one to buy?
- Are topical creams like IcyHot etc. useful?
- Any other tips to minimize swelling/bruising/inflammation/pain?
Thanks in advance
I've been a bit hesitant replying since you pretty much ignored my previous message (don't like wasting my time 
), but you seem like a good guy so I'm giving this another shot 
. I'll try to go over some of the things you mentioned -
Swelling and inflammation - did you try cold packs? It should help with that, along with the meds of course. I think it's going to get much better over the next week or two so I wouldn't worry about it too much but definitely try cold packs if you haven't.
Haven't tried any topical creams, you want to use it for the pain or anything else? I think the pain meds you're taking (assuming you're taking everything you were given) should be enough, and if not you can ask Rozbruch for something else. I'll be very surprised if a cream is going to do a better job than the pain meds but let us know if you tried.
You can massage your muscles, your PT might do that as well. Obviously need to be careful. I asked Rozbruch about massage gun and foam rollers and he said they're both fine. My PT (who has worked with many LL patients) said he was told even at the lowest setting the massage gun was painful to use, so I was holding off buying one. Funnily enough, I decided to order one and it should arrive today. I ended up buying the Theragun PRO 4th gen, which is probably the best on the market. You can buy the 5th gen for additional $170 but you don't really get much value in return.
I was also very surprised you were cleared to fly so early, I thought there is a risk for blood clout but I'm glad you're ok. Doctors typically ask patients to wait a couple of weeks before flying back, I guess because of the risk and that it's going to be a very painful experience beforehand. Anyhow, this is behind you 
What's your PT situation? Do you have a local place/guy? I might have some tips I can share privately. Anyhow, you definitely want to do PT after 3pm, the more you do the better. Keep in mind your body is going to change significantly over this period, meaning even if you did something and it resulted in pain, it might be completely fine a few days / week later, so keep that in mind. Are you also making sure to move around throughout the day or do you mostly stay in bed / wheelchair?
I remember the days of waking up soaking wet, that wasn't fun . Fortunately I wasn't in pain but definitely wet. I assumed it's my body healing from the surgery. I don't remember exactly when it ended but I think sometime in the first few weeks, it didn't last that long.
Stay strong ✊
Quote from: hippo60 on February 17, 2023, 03:00:11 PMI've been a bit hesitant replying since you pretty much ignored my previous message (don't like wasting my time ), but you seem like a good guy so I'm giving this another shot . I'll try to go over some of the things you mentioned -
Brother my apologies and I assure you it was 100% unintentional. I think I quoted you in a response. Thanks for the grace, heaven knows last week my brain was just as fried as my body.
I REALLY appreciate the detailed response. I'll PM you!! I hope you're healing well!
QuoteSwelling and inflammation - did you try cold packs? It should help with that, along with the meds of course. I think it's going to get much better over the next week or two so I wouldn't worry about it too much but definitely try cold packs if you haven't.
I tried cold packs, and they did help. You are right about the inflammation going down. It's night and day different this week.
QuoteHaven't tried any topical creams, you want to use it for the pain or anything else? I think the pain meds you're taking (assuming you're taking everything you were given) should be enough, and if not you can ask Rozbruch for something else. I'll be very surprised if a cream is going to do a better job than the pain meds but let us know if you tried.
I tried IcyHot and Biofreeze for pain. I can tell you that IcyHot works wonders for temporary pain relief. Biofreeze didn't do much. I'm trying to not be dependent on opioids and muscle relaxers, though my primary care doc yelled at me about that this morning. He told me to take whatever I need to be comfortable for as long as I need it. I took a muscle relaxer today
QuoteYou can massage your muscles, your PT might do that as well. Obviously need to be careful. I asked Rozbruch about massage gun and foam rollers and he said they're both fine. My PT (who has worked with many LL patients) said he was told even at the lowest setting the massage gun was painful to use, so I was holding off buying one. Funnily enough, I decided to order one and it should arrive today. I ended up buying the Theragun PRO 4th gen, which is probably the best on the market. You can buy the 5th gen for additional $170 but you don't really get much value in return.
Amazing, I literally just order it. Thank you!!
QuoteI was also very surprised you were cleared to fly so early, I thought there is a risk for blood clout but I'm glad you're ok. Doctors typically ask patients to wait a couple of weeks before flying back, I guess because of the risk and that it's going to be a very painful experience beforehand. Anyhow, this is behind you
Can't think of a worse day in my entire life.
I stayed in the hospital a night longer than you, but that's only because I couldn't pee lol. I talked about this with Dr. Rozbruch, and given my labs and overall health, he wasn't concerned. I honestly love his philosophy of "go recover where you'll thrive". He did say it would be painful, and my God he wasn't wrong.
QuoteWhat's your PT situation? Do you have a local place/guy? I might have some tips I can share privately. Anyhow, you definitely want to do PT after 3pm, the more you do the better. Keep in mind your body is going to change significantly over this period, meaning even if you did something and it resulted in pain, it might be completely fine a few days / week later, so keep that in mind. Are you also making sure to move around throughout the day or do you mostly stay in bed / wheelchair?
Any/all PT tips are welcome. In chatting with Erica initially, she told me that Dr. Rozbruch needs to clear my PT person to ensure they strictly adhere to his PT protocol and don't injure me. I was going to engage a PT clinic - there are many excellent ones here - but haven't yet because of this.
I can't do PT in the afternoon. If I do I can't sleep at night. So I do it in the morning and early afternoon. 2 sessions, one hour total. The exercises from the recovery manual. I also stretch. A LOT. This is helping the most. I had LOTS of ROM, could basically do the splits before the surgery. I'd like to get back there again.
Interestingly my primary care doc told me to look into hydrotherapy also. Erica just cleared me for this as long as it's non weight bearing. There's a great place near me, they have a treadmill inn the pool and film it all underwater and this is supposed to massively help with gait. As soon as I get the stitches removed I'm doing that.
QuoteI remember the days of waking up soaking wet, that wasn't fun . Fortunately I wasn't in pain but definitely wet. I assumed it's my body healing from the surgery. I don't remember exactly when it ended but I think sometime in the first few weeks, it didn't last that long.
My night sweats have mostly subsided. Thank God. My primary care doc told me it's my body's response to fighting the inflammation at night.
QuoteStay strong ✊
You too brother. We're both going to make it!!
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